Multiple Sclerosis

Certainly a life changer... I was diagnosed with Multiple Sclerosis a few months ago (09/00), and it's definitely not a pleasant experience. Knowing that somewhere in that lump they call your brain there's several spots that just don't work properly anymore is a horrible experience. The physical aspect of the disease can be easy to deal with.. Shit, I'm a lazy ass anyway, so sitting in a chair all day is fine by me, but when it comes to losing my cognitive abilities, that's where I draw the line. I've noticed quite a bit of change in the last few months. I have great difficulty thinking in a linear way, I find myself going off on tangents and then completely forgetting how I got there. I find myself losing periods of time very frequently.. I will "wake" from something, which could be anything from just turning around to driving somewhere, and not know how I got there or what I was meant to do once I arrived. I am 23 years old, a former drug addict and alcoholic college kid, and now they've told me I cannot live the decadent lifestyle I was so accustomed to. So be it. I quit smoking, quit using, quit drinking. I've discovered now that these things were my only passion in life, and I need to discover something else which gives me meaning.

Surprisingly, being sober for this period of time has not cleared my mind as the doctors and I thought it would. Apparently the disease has done much more damage than the drugs could have, and this is somewhat of a paradox to me. I expected that all the awful things that would happen to me would be a consequence of my self-abuse. This sprouted from nothing... Completely out of my control. Unimaginable. I was immortal. Twenty-three, no worries except what i had done to myself.

My immune system is attacking its own nervous system for some ungodly reason.

At any rate, it's not fun, and I wouldn't wish this state on anyone.

Also, they honestly have no idea what causes this disease. It could be an immune system disorder, which is how they're treating it in my case. It could also be caused by a viral infection at a young age (linked to the immune disorder theory). It may (although there is not enough evidence to support this) be hereditary.

Until you're diagnosed with it, you honestly cannot imagine how little they know about this disease. Ten years ago they said they would have told me to leave and come back if I went numb again. Great.

Update: (02.20.01) Walking is a challenge now.. I think it's called spasticity... My legs jerk about and I trip over my toes, which is a very odd sensation. In any case, it's progressing and that SUCKS ASSHOLE. :)

Update: (07.16.01) Seem to be in remission at this point - medication (Copaxone) is definitely helping out. Been working out, getting in better shape I hope. Seem to be getting better. Who knows though - I backslide every week or so and get drunk. Awful.

Update: (12.25.01) Merry Christmas everyone, btw. :) Doing well so far... Losing balance slowly but surely, but hasn't stopped me from doing what I need to do. I've somewhat come to terms with the drinking and only do so about once a month which is helping my health. It's amazing that I never noticed how draining smoking, drinking and drugging were on the body until now. Feeling good at any rate.

Update: (05.11.02) Wow, haven't updated in a while. I've stopped taking the Copaxone - not for any substantial reason, but just on a whim. I have severe brain fog at all times - I lose my train of thought very easily and find it extremely difficult to focus on anything. Cognitive problems seem to be rising... That's not cool. I'm having more problems walking, but not too bad. Still drinking regularly, and you should see my entry on Alcoholism for input on that one. In any case, thanks.

Update: (09.15.02) Started back on Copaxone a couple months ago. I long for death at this point. This disease has caused me more grief in the past few months than I could've imagined. It's not much more severe, but the symptoms come much more regularly. Personal relationships have become difficult as my mind and body aren't working together anymore... I walk into walls, I think in circles, I feel like there's a big empty space in my mind where certain thoughts and emotions used to be. It's a very interesting feeling sometimes and I wish I could somehow "record" these sensations and allow other people to experience them. In any case, I see the end coming soon as I don't think I can bear this any longer. I see others in wheelchairs and people with worse afflictions and I pray that I could become them. "Why wasn't I struck down and made unable to walk/think/whatever? Why am I allowed to walk around like a stumbling circus freak?" Well, fuck this. Fuck you - fuck your health, your sickness, fuck your ideals, fuck your life, fuck your religion, your gods, fuck your loves, your hates, your joys, your griefs... Psyche is breaking down and I can't stand it anymore.

Update: (02.09.03) Exacerbation last week. The left side of my back and left arm went completely numb over the course of a few days. I didn't go to the doctor initially since there's really nothing they can do but shoot me full of steroids. Last Wednesday I was forced to go since I couldn't sit at work any longer, and yes, I did get pumped full of (1 gram) Solu-medrol through I.V.. I'm just finishing a course of oral Prednisone and am feeling like hammered DOG SHIT. Shakey, unable to think clearly, exhausted yet horribly wired. Talking to people is very difficult as I have to start my sentences over several times before I get the words right. At least I can still type though. I want to shut down, pack up and move into a cool, dark hole in the ground. Leave me out of this shit - I want nothing to do with it. Bah. Just very out of it at this point. Still numb.

I graduated from A&M in 2006, and in late 2007 was working long hours (12-14/day 7 days/week) in a very stressful position at a somewhat psychotic company. The stress pushed me into an exacerbation and I began using a cane to walk as I fell down several times in the office and had to out myself because people thought I was drunk. I hadn't told them about the MS since, well, it was none of their fucking business.

I was in management and thus was allowed to work from home if needed, but even that became difficult as my legs continued to shut down. I became horribly depressed and lethargic, unable to get out of my apartment as I had to go down a set of stairs to reach the sidewalk. I laid in bed watching episodes of Lost (torture) until finally the checks from work ran out along with my bank account and I was served an eviction notice.

A concerned friend called my family and they came in to assist in moving my things back to my home town. I've been here since and have gotten more and more disabled as time goes on. I now use a walker or forearm crutches to get around, sometimes a wheelchair if needed.

In August I went to San Diego to get scanned for CCSVI, the newest area of research in MS, suggesting a vascular connection to the disease. After the scans I lost vision in my remaining eye, and have more difficulty walking, thinking, talking, etc. I must have become more sensitive to the contrast dye, so I will not go back for the "treatment" as it involves injecting me with more dye.

I have accepted my fate and welcome the inevitable shut down of my body with open arms. I am not suicidal, but when death comes it will be the release I've waited all these years for.

If you know someone with MS, hug them, and tell them you love them. I am now alone all day, every day. I am an elderly man at 32, waiting to die in his home, family mere minutes away but alone nonetheless. People run from what they fear, and I am that fear.

To everyone around me, I look and act fine. Going to work, exercising at the gym, socializing with friends- these are the things that keep me going. Having been diagnosed with MS in 1998 with no significant relapses for years allowed me to live in a sort of denial. I say "sort of" because it is hard to deny having the disease when I gave myself an injection once a week. This shot was supposed to help reduce the number of exacerbations, which it did for a long time.

When I recently fell out of remission, I was terrified. Over one week, the right half of my body went numb. I was walking with a limp. This was a big problem because I lived on the third floor and there was no elevator. Falling up the stairs made me angry. I worked so hard, expended so much time and energy, and spent thousands of dollars to control this disease. Wake up call: this can't be controlled. The progression can be slowed, but putting all of my faith in just taking one shot and exercising was not enough.

During late June, I went through a series of tests. It took two weeks to receive the results. When my neurologist called me late at night I knew something was wrong. I waited for her to tell me how bad it was. She began with, "Well, this is very disappointing." My heart started pounding and tears filled my eyes. She told me that my 2003 MRI shows significant worsening when compared with the 1999 MRI. I feel fine right now, but I have something called a "hot spot," or an active lesion, plus many new lesions. To describe it flippantly, my brain is actively eating itself. To put it bluntly: I am not in remission.

I expected some bad news, as I had an exacerbation during the entire month of May, but it still came as a shock. When I felt good for so long, I started to believe that this disease wasn't so bad, that I could control it. When I got sick, I couldn't stop myself from believing that I may have caused the exacerbation. Now I know that isn't possible, but I couldn't stop questioning myself. Before May, I had been exercising every other day, pushing myself as far as I could go. I walked out of my health club dripping sweat each time I left and felt that I was doing the right thing for myself, not considering the fact that heat is bad for people with MS. I questioned my schedule, which consists of twelve to fourteen hour workdays. Stress is also not good for people with MS, and that schedule was a source of great stress. I felt guilty for relapsing.

It has taken two months, but I believe that my exacerbation wasn't my fault. My doctors, family, and friends were there to encourage me to reread all of the facts about multiple sclerosis. I had avoided doing so, knowing that some of those facts were bleak. Reading it again, I tried to find not just facts, but success stories. Yes, I did find the horror stories, yet I have tried to embrace the success stories. Stories about women having careers and families cheered me greatly. Those stories helped in my decision to take a more aggressive approach to dealing with my disease.

I had taken Avonex, an interferon drug, for five years prior to this recent relapse. Avonex is an interferon 1a drug injected intramuscularly once a week. Its purpose is to slow the progression of MS by reducing the number of lesions, which in turn reduces the number of exacerbations. My 2003 MRI results showed that this drug was not working.

My doctor then recommended that I look at two other drugs, Betaseron and Rebif. Both drugs are also interferons, but Betaseron is an interferon 1b drug, while Rebif is an interferon 1a drug like Avonex. I felt lost but determined to choose quickly. I called the drug companies and spoke to their representatives. Each company provided a kit describing their medications. I pored over these kits, watching each movie, reading each pamphlet, attempting to decipher the meanings of some of the side effects, and in general driving myself insane.

In the end, I chose Betaseron because it has stood the test of time. When I began taking Avonex, it had only been on the market in the US for two years. The long-term effects were not known. Rebif has only been approved in the US a short time, and I could not find any research on the long-term effects. I wanted something proven to work over the long haul. Now, the side effects can be the same as the Avonex: depression, suicidal ideation, anxiety, liver problems, injection site reactions, risk to pregnancy, etc. Those are all very frightening things, but I had to weigh the pros and cons. In the end, I chose Betaseron. The decision was made and I called my doctor, who gave me a prescription.

At my pharmacy, it takes between one and two days to receive Betaseron, so when I went in, I was ready. Well, ready to pick up the medicine, but not ready for the price. When the total came up on the register, I said something to the effect of, "Oh my God, you have to be kidding," and numbly handed over my credit card. I was used to paying quite a bit for Avonex each month, but was still surprised at the huge jump in cost. I now accept that you get what you pay for, and hope that it is worth it.

With my new medicine came new paraphernalia. I use the term paraphernalia because I now feel somewhat like a very organized junkie. My bathroom cabinet is full of Tupperware containers. That is not something unusual, but if you look closely, you will see the term BIOHAZARD on some of the Tupperware. Some containers contain syringes, each stored according to size and gauge. Others house cotton pads, alcohol pads, and little Band-Aids. Every other day, I go to this cabinet to collect the things I need to administer this medication.

Using Betaseron is a process. The medicine must be reconstituted before being injected. To do this, I have to draw 1.2 ccs of sodium chloride into a syringe. The sodium chloride is then injected into a vial which contains the interferon beta 1b. Once that process is complete, it is necessary to check the color of the reconstituted solution. If it is not clear, it must be discarded and the process repeated with two new vials of the sodium chloride and interferon. After checking the solution, 1 cc of the reconstituted solution is drawn into a new syringe. The injection site is then cleaned with alcohol to prevent infection. After all of these steps have been completed, I can give myself the shot. After the shot, it is necessary to massage the injection site, followed by icing for five minutes. The last two steps are to prevent injection site reactions like bruising and redness. Unfortunately, I've developed both. The bruises may last up to two months, but I take comfort knowing that I don't wear midriff tops or short skirts, or I would probably be asked questions I don't want to answer.

I do not mean to sound cruel when I say this, but having MS is my damn business. Some people in my workplace know about it, but only those who have to know or I feel should know. When I was going through infusion therapy in May to combat the exacerbation, I had to go to a cancer center. As I left after my first treatment, I ran into a coworker of mine. The gauze wrapped around my wrist was quite obvious, and she asked me if I had cancer. I looked at her and said no. She stared into my eyes, saying nothing, asking everything. I said nothing. I turned and left the hospital praying to God that she wouldn't tell anyone she had seen me there, yet feeling bad for saying nothing. I know I am under no obligation to tell anyone anything about my personal life, but being caught at the cancer center and having no explanation for being there was difficult. I plan to continue saying nothing if I feel it necessary. Uncomfortable or not, it still is my decision.

I may be saying nothing for a while when I begin seeing friends and colleagues I haven't seen since spring. I have been taking Betaseron since July 22nd, and am doing well, minus the bruising. There is another medicine in the bathroom cabinet to combat the side effect of fatigue, and it appears to be working. It is called Provigil, and is commonly prescribed for narcolepsy. Narcoleptic, I am not, but if it works, I'm all for it. I am trying to remain positive, but I have my moments of frustration. Bookmarking the success stories of other MS patients has been a comfort to me. I would like to be one of those success stories. One day at a time, I may be coming closer.

In people affected by MS, patches of damage called plaques or lesions appear in
seemingly random areas of the CNS white matter. At the site of a lesion, a nerve
insulating material, called myelin, is lost. Clinically, MS is a hard condition to characterize because it
is very unpredictable and variable. Depending on which areas of the CNS are
affected and how badly they are damaged, the type and severity of symptoms can
vary greatly.

No two people get MS in exactly the same way and the expression of each
individual's disease is as unique as their fingerprints. However, the different
courses of the disease, both within an individual and within the whole
population, principally differ in their timing, location and severity.
Underneath similar processes (including demyelination and sometimes other forms
of nerve degeneration) are going on.

Although recent research indicates that the biochemical make-up of lesions may
vary between different forms of the disease, this is not the reason why people
with MS have such widely differing symptoms - it's because nerve damage to
one site usually causes completely different symptoms than damage to another.

In general, people with MS can experience partial or complete loss of any
function that is controlled by, or passes through, the brain or spinal cord.

Case Study

09/00/91 Patient presents to Athens
Medical Center, Dr. Marshal Long with the following symptoms: tingling in
the groin, upper thighs and palms while bending chin towards chest, and
sensitivity to heat. C-spine x-rays results are normal. Symptoms
eventually went away. Possible diagnosis of Lhermitte's Sign.

06/00/95 Patient was assigned to
physical therapy with John Williams in Princeton, WV for foot pain and was
taught stretching exercises. Also went to Dr. Bear of Bluefield Regional
Hospital for stress test due to turning red at exercise class. The symptom
of heat sensitivity had returned. Stress test was normal.

11/00/95 Patient experiences symptoms
of right arch pain when jogging, tingling in palms, tingling down groin when
bending chin towards chest, heat sensitivity, food "catching" in throat - seemed
to be swallowing wrong, feet stinging, and difficulty holding bowelmovements.
The patient contracted her first urinary tract infection. Symptoms went
away within three months.

12/14/98 Patient has left hip and lower
back pain which seemed to be associated with sciatica. Other symptoms
include tingling, stinging in arms, groin and thighs. She had difficulty
walking and couldn't go to work. Had x-rays done.

12/20/98 Patient undergoes MRI of back
with no contrast.

01/08/99 Patient undergoes MRI of the
brain with Galadium contrast resulting in a referral to Neurosurgeon, Dr. Shah
Siddiqi.

01/26/99 Patient is seen by Dr. Siddiqi
and referred to Neurologist, Dr. William Merva. The referral letter states
"over last two months" had bilateral hand tingling, numbness and abnormal
feelings of feet, numbness of lateral aspect of right thigh, generally weak and
tired, reduction in memory, and abnormal sensation in back of scalp.
Patient was taking Prednisone for an allergic reaction.

02/10/99 Patient undergoes cervical MRI
with contrast and has an allergic reaction to the contrast later that night.

02/15/99 Patient is given a definite
diagnosis of Multiple Sclerosis and prescribed 3 days IV SoluMedrol.
Carpal Tunnel is cured. Patient did not take a tapering-off dose of
Prednisone.

03/16/99 Patient's right knee is
turning back, hyper extending and she is having spasms in her right calf muscle.
These symptoms lasted for five days. Patient was prescribed Ketoprofen but
took Motrin instead.

04/06/99 Patient began administering an
Avonexinjection to herself once a week.

06/03/99 Patient is seen by Theodore P.
Werblin, M.D.,P.C. in Princeton, WV due to having pain in the right eye with
blurry vision and floaters. Eye tests prove negative.

06/29/99 Patient is seen by Joel C
Morgenlander, M.D. of Duke University Medical Center for a second opinion and
diagnosis of Multiple Sclerosis is confirmed.

Patient is now treated for MS by Dr. Virginia Simnad at
University of Virginia. Dr. Simnad specializes in chronic progressive
neurological diseases.

Patient's current medications are Avonex Injection once a week,
Ditropan, Baclofen, Zocor, Nasonex, Ibuprofen, Metamucil, Claritin, Robitussin
and a Daily Multivitamin. She experiences side effects from some of these
medications such as flu-like symptoms from the Avonex, dry mouth from the
Ditropan, and increased fatigue from Baclofen. Although she has serious complicatioins with this disease she is able to lead a full and happy life with her family and friends. She participates in church functions, exercises by walking more than 2 miles daily and attends yoga lessons. She has a very positive outlook on everything in her life even though MS makes her life very difficult.

The revelation is that the patient is my mother. It scares me to
think that she is dying of this horribly slow and debilitating disease.
She is very dear to my heart and I love her so much. I want to thank her
for being my subject for this write-up. I hope that she will continue on
her journey with multiple sclerosis with the positive attitude that she now has
and remain strong throughout.

A good friend of mine was diagnosed with this disease a few years back. She did as much research as she could on it, and was a quite upset to discover there is so little information on it. Here is what she has told me about the disease:

It is not contagious, nor directly inherited. They are looking into perhaps genetic coding making certain people more susceptable to this disease.

It affects more women than men.

The average age range of diagnosis is between your 20's and 40's. 30 is the most common age.

Some common symptoms of MS are listed below. Not everyone feels everything on the list. Some feel all of it. Others, only one or two. MS is a completely unpredictable disease, which could be why finding a cause and cure is such a long struggle.

Symptoms:

Vision disturbances - can include anything from blurring of vision, seeing double, involuntary rapid eye movement, in some rare cases even total loss of sight.

Extreme fatigue - As in getting up out of bed can suddenly knock the wind out of you. The activity often doesn't match up with the amount of fatigue you feel.

Stiffness of Muscles (spacticity) - This can affect your mobility. It can also go into spasms which can be quite painful.

Diagnosing MS is a difficult task. Doctors will usually put you through a battery of tests before proclaiming "I believe you have Multiple Sclerosis." At first, my friend was misdiagnosed with a viral infection in the spine, or somesuch rot. It wasn't until she repeatedly kept going back with the same issues that the doctors realized there was something bigger going on. She had to go through numerous blood tests, CT scans, MRI's, the works, until they were able to put a finger on her problem.

Drugs and other attempts at battling MS are STILL in experimental stages. They are quite costly. Most workplaces shy from this disease because of its inherant costs. You can sign up for experimental programs. Currently my friend is on one in which they supply her with the medication, she takes it weekly, then reports once a month for testing and lets them know of any difference/changes. She pities the people that get the placebo, but at the same time envies them. The medicine she takes is injected and pretty much knocks her off her feet for a day. Update as of March 2002: Her program ran out this month. She is now going to have to pay for her meds. Hopefully the company she works for is sympathetic and has a good package.

One day they may find a cure, or at least a cause. In the meantime, the disease is rarely fatal; she can live a long life if she is careful and takes care of herself.